Note: Included below are some 'Quotable Quotes" on psychosocial 'CBT'
for ME/CFS. Note that some of these quotes are by individuals who are currently presenting at the UK BACME conference that the patient charity AYME is 'facilitating'.

We strongly disagree with the statement that no rehabilitation approach is intended to be curative. The intention of cognitive behaviour as practised in our research group is definitely curative Too often therapists agree to far less concrete and less achievable aims, still within the scope of chronically ill patients. The art of cognitive behaviour therapy is to broaden the patients vision to a future life as a well person. After reaching most of the personal goals, one of the last cognitive interventions in cognitive behaviour therapy is for patients to stop labelling themselves as CFS patients Everyday bodily signs and symptoms were no longer interpreted as indicating CFS.

The first treatment protocol developed by our own research group has much in common and can best be compared with the programs by Sharpe and DealeThe initial sessions deal with impeding cognitionsThe main goal of the treatment is full recovery, the supplementary objective being return to the workplace. (Ed. note- Michael Sharpe was Co-PI of the PACE trial)

"Frequently, passive CFS patients have rallied the support of a considerable number of people. It is also common for those in the patients environment to be just as concerned and anxious as the patient. This support may contribute to the maintenance of the patients complaints. If this seems to be the case, the spouse or another key player from the patients environment should be invited to attend a session to discuss how to cut back the support given."

"By increasingly making it the patients own responsibility to detect and anticipate difficulties and to find solutions, the patients sense of control will be enhanced and somatic attributions will be reduced.
The patient, who by this time is no longer a patient, has learned how he can influence his symptoms."

"Getting Rid of the Patient Label
Many patients find it hard to stop seeing themselves as patients. The term chronic fatigue syndrome already seems to imply a permanent condition. The fact that many CFS patients have been suffering from symptoms for quite some time before they are referred for CBT does not contribute to their developing an optimistic outlook as far as a full recovery is concerned. In addition, patients who are referred to a psychotherapist for CFS generally assume that they will learn to cope with their complaints rather than learn to perceive themselves as healthy individuals again. This is why shedding the patient label should be one of the first points on the treatment agenda. In the final phase of the treatment this point is raised again when the patient is asked what he thinks still needs to be done before he can replace the marker reading patient by a label indicating healthy.
The response of healthy individuals who are suffering from all kinds of flu-like symptoms will be quite different from the reactions of CFS patients, who, when they are incidentally experiencing symptoms again, will usually interpret signals from the body as symptoms of CFS instead of normal and temporarily fluctuations of the body."

CBT is based on a cognitive behavioural model of CFS. According to the model the symptoms and disability of CFS are perpetuated predominantly by dysfunctional illness beliefs and coping behaviours. These beliefs and behaviours interact with the patients emotional and physiological state and interpersonal situation to form self-perpetuating vicious circles of fatigue and disabilityThe patient is encouraged to think of the illness as real but reversible by his or her own efforts
rather than (as many patients do) as a fixed unalterable disease.

This the most complex treatment. It involved element of simple pacing to stabilize the patient's activity, graded increases in activity as with simple incremental pacing and a psychological component to directly address patient's beliefs and fears about symptoms and functioning.

Essence
The essence of cognitive behavioural therapy is helping the patients to change their interpretation of symptoms and associated fear, symptom focussing and avoidance. Patients are encouraged to see symptoms as a reflection of reversible psychological and physiological processes rather than as evidence of fixed disease.

Aim
The aim of this treatment is to change the behavioural and cognitive factors, which are assumed to perpetuate the persons symptoms and disability. It is anticipated that by reversing these, physiological changes will follow and the person will be able to make a gradual improvement in both symptoms and functioning.

Theoretical model
The theoretical model assumes that symptoms and disability are perpetuated by psychological and behavioural factors (and their physiological consequences). These are assumed reversible. The model emphasises the importance of the patients understanding of their illness and interpretation of symptoms as warning signs as understandable but incorrect. Fear of symptoms and consequence avoidance of activity associated with symptoms is emphasized. It also acknowledges that the patients concerns and beliefs are related to the wider social context and addresses the information available to the patients and the attitudes and views of family."

Wessely, Sharpe, and others have suggested a cognitive behavioral model of CFS: it is well known within the field that dysfunctional illness beliefs and avoidant coping perpetuate both the symptoms and disability of CFS. One of the beliefs of CFS patients that predicts outcome is that exercise is dangerous or damaging.

Peter D. White, M.D.- CNS and ANS Responses to Exercise in Patients with CFS Neuroimmune Mechanisms and Chronic Fatigue Syndrome: Will Understanding Central Mechanisms Enhance the Search for the Causes, Consequences, and Treatment of CFS?
June 1213, 2003http://orwh.od.nih.gov/cfs_june03report.pdf

Click to expand...

---------------------------------------------------------------

"SHEPHERD: I think there's a certain degree of empire building going on here amongst the psychiatric and psychological professions. CBT seems to be sort of moving into all kinds of illnesses.

ATKINSON: But it is used for physical things.

SHEPHERD: It is used for physical things and this is perhaps the argument that NICE would make - that it's used sometimes with the management of cancer and serious physical illnesses like Multiple Sclerosis. But I think this argument is disingenuous, it's not a primary form of treatment there as is being recommended for people with ME CFS and if you went along to a cancer specialist and were just offered CBT as the primary form of treatment you'd be quite horrified, in fact you'd probably think you were being treated with medical negligence.

CARR: It was sold to me as something the CBT would make a big difference, it would change my outlook and it was what they were offering at that time as a cure for ME.

ATKINSON: That's Natalie Carr, a 31 year old teacher from Oxford, who's had ME since getting glandular fever when she was 17. For her it was all talk and no action.

CARR: It was sold more as a cure than as a coping strategy I'd say.

ATKINSON: And in practical terms how did you find it?

CARR: I found it useful to talk about my ME but it certainly didn't improve things when I was coming for a relapse and so on, I tried all the strategies that the CBT had suggested but it didn't change the intensity of the relapse or the length of time I was ill for. And as time went on it really reinforced with me that it was a physical illness and certainly mind over matter was only going to have a very limited effect."

All the quotes you have given are from five - ten years ago or from another country. I am saying things are changing at least at Barts. Things are improving in the way that we want them to improve.

You'll actually see from the link below that the therapy at Barts was excellent. And its exactly the type of therapy that should be offered to patients with this dreadful illness. Why is it that you cant see my experience was valuable and why is it you cant see it might be valuable for others?

Appreciate all the points here (what an ignorant history - quotable quotes - can't erase history). Have a feeling the anti "behaviourists" (like me) are because the history is still very much with us. And in most areas fighting to keep alive as if forming a major role in ME. In the light of science at last we know it most certainly does not. All my aids come from informed medics and researchers (international) shared here on PR. How much better for all to have up to date Docs with research and findings, doing the right testing - treating. Then I would have not missed 12 years out of life big thanks to Rich.

I may have difficulty believing the significance of your report because, for example, I heard a report of what Peter White said at the BACME conference this week. Among other things, he said clinicians should omit the word pacing from our lexicon.
GET/graded activity is the way forward.

Once told I was imagining all the perfectly obvious collapsing as simply all in the mind I think the tables are turned - quite what is in the psychiatric mind - frankly I would'nt want to know having come across a couple of them.
.

Firstly, Astrocyte, in case it wasn't clear, I didn't write any of that.

I may have difficulty believing the significance of your report because, for example, I heard a report of what Peter White said at the BACME conference this week. Among other things, he said clinicians should omit the word pacing from our lexicon.
GET is the way forward.

Have various things to do. Others may reply.

Click to expand...

Hmmm. Well I tend to go with first hand experience, rather than what somebody said, particularly as so many people are so selective about what they hear. And as I've talked a lot about pacing with the therapist I've worked with I'll stick with that for now.

When the leaflet for the CFS/ME psychology service at Barts omits the word Pacing I will believe you Dolphin. As for now, its still there on their new website.

Hmmm. Well I tend to go with first hand experience, rather than what somebody said, particularly as so many people are so selective about what they hear. And as I've talked a lot about pacing with the therapist I've worked with I'll stick with that for now.

When the leaflet for the CFS/ME psychology service at Barts omits the word Pacing I will believe you Dolphin. As for now, its still there on their new website.

But who knows you might be right! Things do change.

Click to expand...

It was in the context of the Peter White talking about the PACE Trial. GET and CBT "beat" (a form of) pacing in it. I don't find the quote hard to believe. Peter White resigned from the CMO report committee in 2001 because it was recommending pacing.

Which leaflet are you referring to? At the start of graded activity oriented-CBT and GET, they encourage people to stabilise. Perhaps pacing is used in that context as it is in the PACE Trial manuals. Perhaps PDW forgot that in his comments.

PDW sees the PACE Trial as showing GET and graded activity oriented-CBT are the way forward. That's what he has been saying for over 15 years and that's what he's been saying in recent times. It is very, very hard to believe anything else in terms of his attitudes/views (esp. given what I heard about what he said the conference).

I may have difficulty believing the significance of your report because, for example, I heard a report of what Peter White said at the BACME conference this week. Among other things, he said clinicians should omit the word pacing from our lexicon.
.

Click to expand...

I'd like to hear recordings of those presentations.

It wouldn't surprise me at all if the claims being made to other clinicians were quite different to the claims being made to patients in order to manage them.

It was only a year ago that White was so misrepresenting the efficacy of CBT and GET in the PACE trial, so it would be rather surprising if he had decided that was a terrible mistake to over-promote these approaches to CFS, and that patients deserved to be spoken to honestly instead.

We have found that three-quarters of our patients with CFS/ME significantly improve or recover with treatment in our clinic. Research has suggested that a quarter recover their health and a further half significantly improve. For some people recovery may not necessarily mean a return to their previous lifestyle, if this contributed to them becoming ill in the first place.

Not to their previous lifestyle - don't I know it - now anything more more to offer ??? Little toe in the field of biology/pathologies might aid them. Don't ask me about the muddle the psycho lobby in all it's forms have imposed/seek to hold in their willful ignorance in this not so united kingdom until this claptrap is exposed in the medical establishment.

One has to ask - has any of them admitted to ignorance clearly available to all - pathologies/treatments (until completely understood) - all they can offer is support ONLY. Don't play games and to the whole of the psychiatric profession ????? you are nuts.

Physician - heal thyself first and not misguide others. Why the h... I should be thinking about their inadequecies when I was suggested "bonkers" (obviously not) 8 years ago, let them stew.

It wouldn't surprise me at all if the claims being made to other clinicians were quite different to the claims being made to patients in order to manage them.

It was only a year ago that White was so misrepresenting the efficacy of CBT and GET in the PACE trial, so it would be rather surprising if he had decided that was a terrible mistake to over-promote these approaches to CFS, and that patients deserved to be spoken to honestly instead.

Click to expand...

Unfortunately, Esther, this makes you sound like a White apologist. I believe you have it the wrong way about. He would not speak honestly to patients. It makes sense to meet the patient's own belief system and then take it from there. Even a half-baked psychiatrist would know that you need to get the patient onside before you can begin treatment.

Why would you naturally assign any change to White as being a change in attitude? More logically to think that any change is a commercial or business decision to change approach. Catch more flies with honey.

I may have difficulty believing the significance of your report because, for example, I heard a report of what Peter White said at the BACME conference this week. Among other things, he said clinicians should omit the word pacing from our lexicon.
GET/graded activity is the way forward.

.
Thank You, Dolphin. I am alarmed by the apparent apologism for Barts CFS Service and Peter White - and by the misguided attempts to claim that Peter White and Bart's have "changed".

.
RustyJ is quite right to suggest that what Barts psychiatrists (and other Bart's Consultants) say to patients is not what they really think and practice.

That is why I asked Astrocyte if he/she had actually seen any of the Reports written about them by Peter White and the 'nice therapist' at Barts. Patients who have requested copies of the Medical and Therapy Reports have been shocked at the stunning discrepancies between what those nice doctors and therapists say to the patients in consultations (unwitnessed, so its the patients word against the professional's) and what the professionals write for the Records (that goes into the Patient Medical Records for ever). And the patients have been even more shocked to see how those 'nice' Consultants have so distorted and misprepresented what the patients themselves had said in the Consultations.
.

Man is so intelligent that he feels impelled to invent theories to account for what happens in the world. Unfortunately, he is not quite intelligent enough, in most cases, to find correct explanations. So that when he acts on his theories, he behaves very often like a lunatic. -Aldous Huxley

I'd like to propose a study: Put the people making those statements into a cage and then use pschotherapy to convince them that they are actually on a beach in the south of France. The goal would be to see how long it takes to change their beliefs. They can't leave the cage until their beliefs change.

That is why I asked Astrocyte if he/she had actually seen any of the Reports written about them by Peter White and the 'nice therapist' at Barts. Patients who have requested copies of the Medical and Therapy Reports have been shocked at the stunning discrepancies between what those nice doctors and therapists say to the patients in consultations (unwitnessed, so its the patients word against the professional's) and what the professionals write for the Records (that goes into the Patient Medical Records for ever). And the patients have been even more shocked to see how those 'nice' Consultants have so distorted and misprepresented what the patients themselves had said in the Consultations.
.

Click to expand...

I have been seeing a therapist for six months. Last week I asked for my records. For some reason I'm not shocked, but the record is severely distorted, and indicates to me that the therapist has no understanding of chronic illness or me.

The very first session note states, "will use motivational interviewing to initiate motivation for change in lifestyle... although the client stated his circumstances were "not due to a lack of motivation". So right away she doesn't believe what I told her, and unilaterally decided what changes I need to make in my 'lifestyle', whatever that means. Is 'lifestyle' a code word for 'illness beliefs'? Or perhaps a code word for anti-depressants, which I refuse to take any more?

The next session note says, "The client reported truly believing that getting on disability would fix all of the troubles in his life." What rubbish. I never made any such statement. Disability would certainly fix my leaky roof, but I've never believed or stated that it fix all of the troubles in my life. That's such a ridiculous claim, how could anyone take it seriously? And yet now it's in my file; it can't be removed. So now I can't submit any of the therapy file as part of my disability claim (now pending for four years!) because it will simply be used as evidence that I'm a malingerer!

Another note states, "the client appears to be extremely depressed with no desire to help himself". Really? Then why did I go through the trouble of getting myself to the therapy session, or keep fighting with the doctors to get help? 'Cause I have a psychological need to fight with doctors, lawyers, and bill collectors?

Reading this trash was so upsetting, I had to do it over a period of a few days. I was supposed to read through all of the notes in the presence of the therapist - it's "The Rules". But I couldn't do it; it was too upsetting. So they "allowed" me to take my records home anyway.

So yes, I highly recommend that people should get a copy of their file, and be prepared to find it highly upsetting.